A lack of sexual education has an impact in all aspects of a person's life, so why are intellectually disabled people given so few opportunities to learn about sex on their own terms?

In May of this year, photos of 18 year-old model Madeline Stuart posing variously in jeans and a T-shirt, leggings, and a two-piece bathing suit circulated widely online. Despite the demure bikini and happy expression of the model, the Internet exploded—fears of exploitation, sexualization, and questions of taste were raised. Stuart, who recently walked the runway at New York Fashion week, has Down Syndrome.

"People get uncomfortable seeing people with disabilities expressing a sexuality, because the perception is that these are not perfect people," said Leslie Walker-Hirsch, a sex educator at the University of New Mexico who teaches a course on intellectual disability and sexuality. "Seeing [Stuart], a lovely looking woman who doesn't display all the negative characteristics people associate with disability—poor social skills, or being overweight, or dressing in a way that doesn't really reflect the fashion of the time—she breaks that stereotype. People in general do not look at people with disabilities as any kind of sexual beings. They look at the disability first."

People in general do not look at people with disabilities as any kind of sexual beings. They look at the disability first.

While 1 in 100 people in North America has an intellectual disability—defined as varying degrees of deficits in intellectual and/or adaptive functions like reasoning, abstract thinking, and practical understanding—Walker-Hirsch's course is one of few of its kind in the world. In fact, the intersection of sexuality and intellectual disability is so rarely discussed that Walker-Hirsch was forced to write a textbook for the class herself. Developed in 2007, the Circles curriculum remains the most widely used curriculum for this topic in the English language.

The lack of sexual education for intellectually disabled people is rooted in a pervasive social problem: no one wants to admit that disabled people are sexual in the first place. "The most common myths [about disability and sexuality] are diametrically opposed," said Walker-Hirsch. "We think of people with intellectual disabilities as perpetual children, who have no interest in sex, who want to stay innocent virgins forever. On the other side we conceive of them as voraciously sexual, as potential predators who are not in control of their sexuality or their desires. Those two concepts don't integrate well together."

In the early 1900s, the issue of sexuality and disability was more easily ignored, thanks to widespread institutionalization and/or forced sterilization. Until as recently as the 1950s, families were encouraged to put their intellectually disabled children in full-time care facilities that often treated their residents like infants. While most parents now keep their intellectually disabled children at home and most schools run on an "included" model (that is, students of all abilities attend the same classes, with requirements and expectations tailored to ability), myths about intellectual disability persist. "Within the disability community—parents, educators, social workers, etc.—there's been a great change in awareness that these are sexual beings," said Walker-Hirsch. "Parents have no doubt that their pubescent disabled child is as sexual as their typical kids, you know, they see it and hear about it. But the public at large still doesn't quite get it."

Sex ed class is a minefield for any child or teenager. When a person's ability to process information, read social cues, or make abstract connections is diminished, it can be impossible. "A young woman I worked with came to see me one day after health class and said she wasn't going back to school," Walker-Hirsch said. "What she'd taken away from sex ed class was that teenagers do drugs, drink alcohol, and have sex, and she wasn't ready to do that, so now she was scared if she did go back that she'd be forced to do that." While teachers may have developed specialized strategies to help intellectually disabled children learn traditional school subjects like math or science, most have never done so for sex ed.

With confusing messages—or none at all—being passed to children with intellectual disabilities at school, the task of sex education often falls to their parents and at-home caregivers, an imperfect model for a number of reasons. "It forces parents to be educators when they'd rather just be parents," said Walker-Hirsch, adding that parents have not received specialized training in sexual education. They're just people, with their own sexual hang ups and preconceptions, many of them with their own histories of inadequate sex ed. "They don't always know, you know, what is the current language for talking about these issues or these body parts," said Walker-Hirsch. "They're afraid they're going to inadvertently make their children the objects of ridicule by telling them the wrong thing or teaching them the wrong words that the other kids will laugh at or make fun of."

Many disabled people are denied meaningful opportunities to learn about and explore our own sexual experiences.

Outside of parents and schools, community programs can offer an alternative resource for sex education—and, crucially, a safe space to practice social skills and interact with the concept of developing sexuality firsthand, though flirting and socializing with other teenagers. "My major experiences [with sex education] were The American Girl Body Book and a 'relationship social skills group,' for young adults on the autism spectrum," said Lydia Brown, an autistic 22 year-old law student and disability activist. But not all community programs are created equal. "It was a pretty horrifying experience. The group ranged in age from 15 to 22. [They spoke to us] in an incredibly condescending tone of voice—like the kind of speech where people intentionally draw out every word because they assume you won't understand otherwise."

The idea that people with intellectual disabilities can't understand, or don't need information about, sexuality is a common misconception. Rather than being uninterested in the topic, however, it seems likely that students' needs are simply being ignored. In a 2003 study published in the Journal of Intellectual Disability Research, four intellectually disabled adults were given individually tailored sex education for ten weeks. 100 percent of participants showed marked improvement in the capacity to make decisions, and especially sexual ones.

Brown, who is asexual, said her disability caused her to question her sexual identity for years—was her asexuality a product of her autism? Was her autism affecting a dormant sexuality? Ultimately, she separated her disability from her sexuality. "Because many disabled people, including autistic people, are denied meaningful opportunities to learn about and explore our own sexual experiences, we are left to fumble through figuring out how relationships and intimacy work," she said. "On top of that, you have abled people who assume that disabled people are outside the possible pool of potential sexual or romantic partners because we are disabled, so a lot of disabled people who want to date and explore relationships haven't really gotten a chance to do that."

Brown conducting an anti-ableism training for Person-Centered Care Services of New York in May 2015, with a slide in the background showing a diagram about independence, autonomy, and interdependence. Photo by Cris Marchionne.

Walker-Hirsch said a lack of sexual education has an impact in all aspects of a person's life. "Sexuality is a huge part of a person's development. It impacts how you perceive the world and how you interact within it. You have young adults going through puberty, and dealing with the changes—emotionally, socially, and bodily—that come from that, and they're not being prepared for it in the way that their typical classmates are."

This lack of preparation can have serious consequences. After leaving school, adults with intellectual disabilities who have not received adequate sexual health information—how to express romantic interest in someone, that masturbation is acceptable and fun in private, or who should or should not be allowed to touch you, and where—may have difficulties integrating themselves in social settings and/or the workplace.

"There need to be environments where children and young adults can make mistakes and learn what's okay and what's not okay, how their bodies are changing, how what the world is asking of them is changing," Walker-Hirsch said. "A lot of children with intellectual disabilities get hugs from the teacher when other children don't get hugs. When that student grows up, and they've never learned who is or is not appropriate to hug... if they're working in a store and run up to a customer, or another employee, or worse yet, a child, they'd be out of that job so fast their head would spin."

A person who is socially isolated, who has been left sexually ignorant, and who is disabled has a much higher likelihood of being a victim.

Difficulties at work or in romantic situations are far from the biggest danger of inadequate sex ed. 30 percent of men and 80 percent of women with an intellectual disability will be sexually abused in their lifetime. Of that 80 percent, over half will have been raped at least ten times before age 18. "Because sex education is poor, and because communication skills of people with intellectual disabilities can make them difficult to understand, or make their construction of a story hard to believe or put together in a totally logical way, abusers look for victims that they can get away with abusing," Walker-Hirsch said. "So a person who is socially isolated, who has been left sexually ignorant, and who is disabled has a much higher likelihood of being a victim."

"The vast majority of my friends who are disabled are sexual assault survivors," Brown said, adding that this history of abuse often comes to bear on the way that disabled people flirt, socialize, and seek romance or sex. "Disabled people are complicated. Some of us want a long-term romantic/sexual relationship, and some of us don't. Some of us identify as some kind of queer/non-straight. Some of us are survivors of sexual abuse. A lot of us are not asexual. Some of us are asexual, and that is okay."